I'm currently on Tocilizumab for GCA under the direction of a specialist physician. I was on 20mg Pred when I started the Tocilizumab which I have injected every 2 weeks. I'm on my third week right now. I was instructed to reduce Pred 5mg every 2 weeks and reduce again 5mg 3 weeks , which is where I'm at 10mg.
I recently developed a feeling of disassociation which I cant shake off. Its worse in the morning. I'm able to function and carry out most tasks, but its very uncomfortable. I also has puffy and blurry eyes.. and my legs and arms feel stiff and heavy with pain particularly along my thighs and shins and cuff areas .My question is could this be caused by the fast reduction in Pred or is it the Tocilizumab?
I hope this makes sense
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How long had you been on 20mg pred? That is a VERY fast taper even for alongside tocilizumab - it doesn't always kick in immediately so most doctors seem to give it a few weeks first. Has your specialist physician previous experience with TCZ in PMR/GCA? TCZ is very effective - but it only works 100% for half of patients, there are 3 different mechanisms that create the inflammation in GCA and the TCZ only works on one of them. If either of the others are involved then you may continue to need some pred to be symptom-free.
I'd be inclined to think it could be steroid withdrawal - although I have heard people complain of this sort of feeling with being on pred - and usually worse at higher doses. Or are these a return of what you would describe as PMR symptoms? Which might suggest that you are nearing the dose half of patients need - it seems to be about 8-10mg when it is needed
Thanks for your respondsI have been on Pred from May 2021 start at 15mg increased to 25mg and tapered down on and off.. was put on MTX which made in have hallucinations and had to stop.
Hi PMRPro. I was going to respond but then saw your response. These MDs just don’t get it. Give the patient a month on TCZ before reducing a few mgs. So I’m still on TCZ except I have an infection Which is giving me a high ESR and CRP and neutrophils. Also white count is 14. So I have stopped Actemra. As soon as I stop my antibiotics and take another CBC. I’m hoping I can go back on it. My ESR was 43. I’m pretty sure this is not GCA. But the thought of it is scary. It’s hard to tell arthritis from PMR except that oxy helps a little with pain. If it was autoimmune I would not get any relief from oxy. Still on 7 mg for adrenals wondering if it’s enough. This is an infection/arthritis. ???
Whatever is raising the ESR, it is unlikely to be IL-6 which is what is involved in PMR and GCA. I don't think the effect of Actemra wears off immediately but not sure.
Have you asked your doctor about what we call "Sick day rules" for replacement of adrenal function?
I do know that prednisone can cause those symptoms. I experience them myself from time to time. Luckily, they're not too bad. I'm sure it'd be quite annoying/concerning if they were any more frequent or more severe.
Can you enlarge on the disassociated condition? It may be more common than you imagine, just regarded differently. I would be very interested to know. I have heard of it in relation to psychiatric disorders as a kind of protective device that the mind has in response to trauma. Is this what you mean?
It feels as if I'm operating outside myself or l've had one too many glasses of wine.. yes I read somewhere that's it is related to psychiatric disorder.. my GP says its ok as long as I can concentrate and execute tasks easily enough..
I experienced something similar in the 80s. I had a very stressful job and would have the sensation of being in a cartoon as I walked to work. Everything bright and unreal and frightening.The thing that is not ok about it is that it bothers you more than anything else. Our purpose in life is not just to function.
My diagnosis was panic attacks, I would listen to endless relaxation tapes, tried hypnosis and everything that I could think of. I held down my job, just.
I became pregnant and the 4 months maternity leave, complete change and beautiful baby girl seemed to put those symptoms into the past.
Interestingly, I was diagnosed with my first autoimmune disease whilst on maternity leave. Graves Disease with severe hyperthyroidism, leading to Thyrotoxicosis . I am sure this was related, and the stress. During my PMR/GCA/LVV j journey ( hate that word) I have had many strange feelings, including feelings of being not quite there. What seems to be absent is the fear. Having conquered the panic attacks once, they have lost their potency. I am anxious about the potential consequences of the diseases and the drugs and they do make me feel weird. My only concession is a little nightlight shaped like a flame that comforts me in the wee small hours.
I hope some of this is useful. You have all my empathy for these disassociated feelings probably caused by the stress of your condition, the condition itself and the steroids. I sincerely hope it passes soon. In my experience, it does when you don’t care anymore - and breathe.
Thank you so much for sharing your experience. I live in Zimbabwe where everyday life is hard, so yes it could be stress related.. I work from home since Covid19 and very blessed to still be working.. should have retired a few years ago, but I have to work to support my granddaughter whose mother passed away suddenly 7years ago. I'm the only bread winner in the family ..there are no pensions or any government support here. So keeping my current job is key to me getting treatment for my autoimmune disease amongst other things. So stress is order of the day trying to make ends meet and not been well doesn't make it any easier. Sorry going of topic. Thank you once again it does help easy the concern that I was only one experiencing this condition.
Your life sounds very hard. I am sorry for the loss of your daughter and the heavy burden of responsibility that is on your shoulders. This feeling that everything depends on you, especially when you are ill, is the worst stress I think. It completely explains why you feel so awful. There is nothing practical that I can offer except a wish for little miracles every day and blessings for your future. 🌈❤️
Jane we never talked about panic attacks before as I can Recall. But I did have my quota for maybe 10 years and the panic attacks came first then came The PMR and GCA and they stayed altogether for a while. I cannot swear that I am free of panic attacks in certain instances I feel they could take over. And after 10 years I am not free of autoimmune either. So we live every day and do what we can while we can. My greatest wish was to visit the Pro in Tuscany but now with much going on with me and my significant other and at 80 I’m not so sure I want to travel anymore. I too had that disassociated feeling while on 40 and 30 mgs of prednisone. It went away.
I would do Tuscany and drive up the mountain. As long as I don’t have to walk up the mountain it could work. Now I focus on getting better. Need a vacation. Can’t think of a better one 😍
Psychiatry.org has a good definition: "Dissociation is a disconnection between a person's thoughts, memories, feelings, actions or sense of who he or she is. This is a normal process that everyone has experienced."
Daydreaming, "highway hypnosis," getting lost in a book or listening to music are common, everyday examples. More severe cases, though, include amnesia and multiple personality disorder!
For me personally, it's just fleeting feelings like being outside myself, acting a role, being in a dream, not being all there, that something's off ...
Though trauma (and stress) can be a precipitating factor, it's also common with some medications, illegal drugs, etc.
Being outside myself and acting a role is exactly what it feels like, however, currently its not fleeting with me as long as I'm upright, its less noticeable when I lay down.
Thank you for sharing your experience I'm fortunate that I don't have confusion, but a feeling of detachment and light headedness, which is very weird snd hard to explain.
I have had those kinds of feelings for many years. I have had an underactive thyroid since my 20s and about 8 years ago I remember reading a research paper on the condition and it listed that as one of the issues with people. I was absolutely amazed but can't remember where I read it now. I was often on autopilot knowing I had no control to 'get back to reality' but never understood why. After reading that I felt a little better about the whole thing.
You have a hell of a lot going on and I'm guessing little time for you. That also can't help how you are feeling.
I don't think I have had many side effects from TCZ but when I first started when I was on much higher doses of pred I got quite a few eye infections which now I am on a lower dose of pred have stopped.
Gosh , well you live and learn, there’s my confirmation. They knocked out my thyroid function with radio-iodine. I am on Levothyroxine for life. The worst part was before diagnosis as is often the case.
Agree with what’s been said, that is a very fast taper for the Prednisone. It took me a full year to taper from 20mg of Pred to zero once the TCZ started working which was 3 months after starting it. Some folks on TCZ still require low dose Pred too. When I was tapering I would have what I called “spacey” days. For instance I might turn left down a hallway where I’ve known for years I’m supposed to turn right.
Do also be careful once below 10mg as your adrenals may need time to restart. Adrenal crises can happen and be very serious. Please ask your doctor if you can slow down the Pred taper for your safety.
I too worked full time throughout PMR and GCA diagnosis and treatment. It can be done, however one still needs to try to find balance and rest in one’s life in order to heal. I hope you are able to with all your stressors!
Thank you for telling your story its very reassuring that I'm not going through something unknown.. I'm concerned that my physician is not going to be easy to manage.. as he is addiment I should ignore what my body is telling me.. I have today increase my Pred dose back to 15mg and I already feel less spaced out and the pain has subsided..Ah..some relief.. thanks to everyone for your contribution to my plight.
His attitude can be a bit dangerous when it comes to GCA. Can he answer the question: what damage will the inflammation from GCA do if left unchecked or not fully treated? The answer is far worse than the potential side effects of being on Pred longer. Particularly once you are down below 10mg. Good luck!
I have had GCA since November 2019 and have been on Prednisolone ever since. I have no experience of TCZ but for a number of reasons it took me a long time before tapering .5mg every four weeks without negative effects. I am now on the fourth week of 4mg. I can’t overstate the difference a much slower taper has made. I hope that helps a little and I wish you well.
Thank you for contribution, I'm realising that my Dr's plan is not working, it's very panful to say the least... I'm going to use the slow plan in the meantime before my next visit with him.
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Help please , Feeling horrible
Feeling blah!!
It's not going well and I am feeling low.
Drugged up feeling after prednisolone 
